Scoliosis - Introduce yourself and meet others

Let's talk about living with scoliosis.
As a community moderator of the Bones, Joints & Muscles and Spine Health groups, I've noticed several members talking about scoliosis, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Get comfortable in your favorite spot, grab a beverage of your choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Spine Health Support Group.

Hello I'm Tree61. I have had back problems for years asking with falling 25ft to the ground on my back, which resulted in a diagnosis of (Flat Back Scoliosis)
I actually thought my doctor was playing a joke on me when he told me I had Flat Back. I just stared at him and giggled. Then asked him what his real diagnosis was. Must be pretty bad if he starts off with a Flat Back joke right?
Nah he was serious. Then he showed my CT scan and sure enough my lower back is completely compressed together and flat. I do not bend forward or backward in my lower back. He also said I had scoliosis. To that I looked at him and said "no I don't I have spinal degenerate disease" He said No you started with Scoliosis. I got offended lol.
That's why I am here. This is all new to me.

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Profile picture for klsteffes @klsteffes

My surgery was 2 days over a 3 day period. I was in the hospital for a total of one week. I was able to take care of most of my personal needs after about 3 weeks and returned to work after about 6 weeks. I was able to walk 2 miles one month after my surgery and 3 miles 6 weeks post surgery. 5 months post surgery I was over 6 miles.

Most things I can do by myself, however some are more difficult than before. This is largely due to my restrictions of no bending or twisting until I hit the one year mark. My husband and/or mom pretty much stayed with me or nearby for the first 3-4 weeks.

I'm confident I'll return to pre surgery activities, perhaps with some modifications. I hope this helps, and good luck. Follow doctor orders!

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Thank you!

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Profile picture for klsteffes @klsteffes

I also have osteoporosis. It’s still possible!

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Thanks so much for the words of encouragement!

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I had apifix surgery for my scoliosis in October 2020 at Mayo Clinic Rochester when I was 16. Although I was not in significant pain before the surgery I know it had to be done to stop my curves progression. Recently I have been struggling a lot with posture, walking straight, and keeping my torso straight. I have tried PT but it didn't really help. If anyone has any advice to gain better posture and make my body look straighter it would be greatly appreciated.

Thank you

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Profile picture for elijahwolfberg @elijahwolfberg

I had apifix surgery for my scoliosis in October 2020 at Mayo Clinic Rochester when I was 16. Although I was not in significant pain before the surgery I know it had to be done to stop my curves progression. Recently I have been struggling a lot with posture, walking straight, and keeping my torso straight. I have tried PT but it didn't really help. If anyone has any advice to gain better posture and make my body look straighter it would be greatly appreciated.

Thank you

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I have struggled my entire life with severe scoliosis and I am 75. It was not corrected when I was young, like you and now I have been advised it’s not feasible. My posture has always been poor. I bought a little upper back brace to wear under my clothes and it has helped. You were wise to have the surgery while you are young. Best wishes!

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Profile picture for tmtm4 @tmtm4

I am 64 and have scoliosis. I have had it since I was ten but thought it just involved two discs. I have had pretty bad arthritis throughout my spine for years, now severe, with foraminal stenosis on multiple levels.
In 2019, I slipped on water at school. While I fell all the time, this time changed everything. I had all the shots, epidurals, etc. Awful!

Finally, my doc sent me to one of the best, a well-respected neurosurgeon. The report said the right's upper lumbar scoliosis convex is compensatory lower thoracic convex to the left—lumbar scoliosis convex the right maximal at L1-L2 measures 40 degrees. I had three smashed discs; two inside the curve and one outside. He would not touch the ones inside the curve and said if he fused the one out of the curve, my back would collapse "in the near future." He said I needed a rod. The second opinion: said he can fuse the one outside the curve. I thought that they were two extreme opinions, so I went back to the first doc and asked him to send me to someone who would not be scared to disagree with him. The third surgeon, of course, said they were both right. He could fuse the one outside the curve, but he also believes I will need the rod "in the near future." The surgery to fuse L5, I think, and a laminectomy stopped the burning going down my leg. Small victory!

I consistently take pain meds and fear when/if my back will collapse. I sometimes have lousy neuropathy down my bottom and upper thighs and feet. I am unsure if my feet are from a failed bunionectomy that broke/dislocated six joints in the rest of my toes. I worked with them for two years before I retired. Now my big toe is fused, and a fantastic surgeon did her best to fix my foot. It still hurts, but nothing like it did.

I have had six shoulder surgeries ending with a Reverse on both shoulders. I won't even go through what the last one feels like now.

The arch and jaw have collapsed, among many other "unique" issues in my mouth. Every dentist and surgeon has a different solution, not to mention charging a fortune.

My head is swirling. I realize Orencia infusions are not good, so I am considering stopping them. The thought of my hands getting worse, though, makes me nauseous. Anxiety and depression make everything worse.

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Hey there! My name is Denise, I am 46 years old, and I was recently diagnosed with severe scoliosis. They want to do several surgeries on my back to basically reconstruct my spine. When I was younger I was diagnosed with slight scoliosis by my nurse in elementary school. So my parents never followed through with it and I had no idea that the back pain I have suffered through was even related to that. However, after having a severe bowel obstruction which left me in the hospital for 3 weeks they had to do a CAT scan to make sure everything was okay. Well because of this that's how they discovered it because they could see through to my back and my spine. I have to be honest, the reason I'm writing any of this is because I am absolutely terrified!! I mean I have to get rods in my back and they have to take out several of my discs which are severely degenerative and to top that off if I don't get the surgery, there is a chance that I could become paralyzed. The last disc is basically becoming unattached to my spine. I can't even talk about this without becoming extremely emotional. Has anyone going through anything like this to get over me any advice? I'd really appreciate it, thank you!

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Profile picture for tmtm4 @tmtm4

I am 64 and have scoliosis. I have had it since I was ten but thought it just involved two discs. I have had pretty bad arthritis throughout my spine for years, now severe, with foraminal stenosis on multiple levels.
In 2019, I slipped on water at school. While I fell all the time, this time changed everything. I had all the shots, epidurals, etc. Awful!

Finally, my doc sent me to one of the best, a well-respected neurosurgeon. The report said the right's upper lumbar scoliosis convex is compensatory lower thoracic convex to the left—lumbar scoliosis convex the right maximal at L1-L2 measures 40 degrees. I had three smashed discs; two inside the curve and one outside. He would not touch the ones inside the curve and said if he fused the one out of the curve, my back would collapse "in the near future." He said I needed a rod. The second opinion: said he can fuse the one outside the curve. I thought that they were two extreme opinions, so I went back to the first doc and asked him to send me to someone who would not be scared to disagree with him. The third surgeon, of course, said they were both right. He could fuse the one outside the curve, but he also believes I will need the rod "in the near future." The surgery to fuse L5, I think, and a laminectomy stopped the burning going down my leg. Small victory!

I consistently take pain meds and fear when/if my back will collapse. I sometimes have lousy neuropathy down my bottom and upper thighs and feet. I am unsure if my feet are from a failed bunionectomy that broke/dislocated six joints in the rest of my toes. I worked with them for two years before I retired. Now my big toe is fused, and a fantastic surgeon did her best to fix my foot. It still hurts, but nothing like it did.

I have had six shoulder surgeries ending with a Reverse on both shoulders. I won't even go through what the last one feels like now.

The arch and jaw have collapsed, among many other "unique" issues in my mouth. Every dentist and surgeon has a different solution, not to mention charging a fortune.

My head is swirling. I realize Orencia infusions are not good, so I am considering stopping them. The thought of my hands getting worse, though, makes me nauseous. Anxiety and depression make everything worse.

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Hi there, Denise!
My heart goes out to you. I’m a teen who had scoliosis surgery about a year ago and I was really scared even though I only had to have 1 surgery and didn’t need to have any reconstruction done / discs removed. I’m so sorry that you are going through all this, and I will definitely pray for you, both for your spine and for your peace of mind in the meantime!! Jesus and Mary are watching over you, and God’s going to work everything for your good. Rest assured He won’t leave you alone; He took excellent care of me.
Some life hacks: you should get someone to take care of you at home during your recovery, and you may want to consider getting some bed rails for your bed; try not to rely on them for too long, but they did come in handy for me early on and helped me become independent sooner. Also, listen to your body and follow doctor’s orders on this, but the main thing that helped me was exercising as much as possible. Walking did hurt on the first day, but it was still bearable, and after that, I think it was actually the best tool I had for pain control.
Prayers and hugs!

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Profile picture for tmtm4 @tmtm4

I am 64 and have scoliosis. I have had it since I was ten but thought it just involved two discs. I have had pretty bad arthritis throughout my spine for years, now severe, with foraminal stenosis on multiple levels.
In 2019, I slipped on water at school. While I fell all the time, this time changed everything. I had all the shots, epidurals, etc. Awful!

Finally, my doc sent me to one of the best, a well-respected neurosurgeon. The report said the right's upper lumbar scoliosis convex is compensatory lower thoracic convex to the left—lumbar scoliosis convex the right maximal at L1-L2 measures 40 degrees. I had three smashed discs; two inside the curve and one outside. He would not touch the ones inside the curve and said if he fused the one out of the curve, my back would collapse "in the near future." He said I needed a rod. The second opinion: said he can fuse the one outside the curve. I thought that they were two extreme opinions, so I went back to the first doc and asked him to send me to someone who would not be scared to disagree with him. The third surgeon, of course, said they were both right. He could fuse the one outside the curve, but he also believes I will need the rod "in the near future." The surgery to fuse L5, I think, and a laminectomy stopped the burning going down my leg. Small victory!

I consistently take pain meds and fear when/if my back will collapse. I sometimes have lousy neuropathy down my bottom and upper thighs and feet. I am unsure if my feet are from a failed bunionectomy that broke/dislocated six joints in the rest of my toes. I worked with them for two years before I retired. Now my big toe is fused, and a fantastic surgeon did her best to fix my foot. It still hurts, but nothing like it did.

I have had six shoulder surgeries ending with a Reverse on both shoulders. I won't even go through what the last one feels like now.

The arch and jaw have collapsed, among many other "unique" issues in my mouth. Every dentist and surgeon has a different solution, not to mention charging a fortune.

My head is swirling. I realize Orencia infusions are not good, so I am considering stopping them. The thought of my hands getting worse, though, makes me nauseous. Anxiety and depression make everything worse.

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Hi Denise

I had a 2 level TLIF (L4-L5-S1) on 4/28 to help correct degenerative scoliosis. I’m 64. My back pain goes back many years . My disks were lying in the curve all crooked hitting nerves. Choose your surgeon carefully. Mayo has been great.

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Profile picture for tmtm4 @tmtm4

I am 64 and have scoliosis. I have had it since I was ten but thought it just involved two discs. I have had pretty bad arthritis throughout my spine for years, now severe, with foraminal stenosis on multiple levels.
In 2019, I slipped on water at school. While I fell all the time, this time changed everything. I had all the shots, epidurals, etc. Awful!

Finally, my doc sent me to one of the best, a well-respected neurosurgeon. The report said the right's upper lumbar scoliosis convex is compensatory lower thoracic convex to the left—lumbar scoliosis convex the right maximal at L1-L2 measures 40 degrees. I had three smashed discs; two inside the curve and one outside. He would not touch the ones inside the curve and said if he fused the one out of the curve, my back would collapse "in the near future." He said I needed a rod. The second opinion: said he can fuse the one outside the curve. I thought that they were two extreme opinions, so I went back to the first doc and asked him to send me to someone who would not be scared to disagree with him. The third surgeon, of course, said they were both right. He could fuse the one outside the curve, but he also believes I will need the rod "in the near future." The surgery to fuse L5, I think, and a laminectomy stopped the burning going down my leg. Small victory!

I consistently take pain meds and fear when/if my back will collapse. I sometimes have lousy neuropathy down my bottom and upper thighs and feet. I am unsure if my feet are from a failed bunionectomy that broke/dislocated six joints in the rest of my toes. I worked with them for two years before I retired. Now my big toe is fused, and a fantastic surgeon did her best to fix my foot. It still hurts, but nothing like it did.

I have had six shoulder surgeries ending with a Reverse on both shoulders. I won't even go through what the last one feels like now.

The arch and jaw have collapsed, among many other "unique" issues in my mouth. Every dentist and surgeon has a different solution, not to mention charging a fortune.

My head is swirling. I realize Orencia infusions are not good, so I am considering stopping them. The thought of my hands getting worse, though, makes me nauseous. Anxiety and depression make everything worse.

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I’m one year post surgery. I’m fused from T4 to S1 with some discs removed/replaced and two rods. My surgery was done over two days, one through the abdomen and the next day through the back.

You will want Help at home, walk as much as possible, and definitely follow Dr orders.

Make sure you have some grabbers to help you pick things up, get a shower chair, and a tushy (Google it. Easily attaches to the toilet and helps when you’re not supposed to bend or twist).

I’m 58, still feel like a spine patient, but each day gets better. I remember how scared I was and emotional. Expect some days of frustration, but the body has an amazing ability to adapt and heal.

Good luck.

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Profile picture for tmtm4 @tmtm4

I am 64 and have scoliosis. I have had it since I was ten but thought it just involved two discs. I have had pretty bad arthritis throughout my spine for years, now severe, with foraminal stenosis on multiple levels.
In 2019, I slipped on water at school. While I fell all the time, this time changed everything. I had all the shots, epidurals, etc. Awful!

Finally, my doc sent me to one of the best, a well-respected neurosurgeon. The report said the right's upper lumbar scoliosis convex is compensatory lower thoracic convex to the left—lumbar scoliosis convex the right maximal at L1-L2 measures 40 degrees. I had three smashed discs; two inside the curve and one outside. He would not touch the ones inside the curve and said if he fused the one out of the curve, my back would collapse "in the near future." He said I needed a rod. The second opinion: said he can fuse the one outside the curve. I thought that they were two extreme opinions, so I went back to the first doc and asked him to send me to someone who would not be scared to disagree with him. The third surgeon, of course, said they were both right. He could fuse the one outside the curve, but he also believes I will need the rod "in the near future." The surgery to fuse L5, I think, and a laminectomy stopped the burning going down my leg. Small victory!

I consistently take pain meds and fear when/if my back will collapse. I sometimes have lousy neuropathy down my bottom and upper thighs and feet. I am unsure if my feet are from a failed bunionectomy that broke/dislocated six joints in the rest of my toes. I worked with them for two years before I retired. Now my big toe is fused, and a fantastic surgeon did her best to fix my foot. It still hurts, but nothing like it did.

I have had six shoulder surgeries ending with a Reverse on both shoulders. I won't even go through what the last one feels like now.

The arch and jaw have collapsed, among many other "unique" issues in my mouth. Every dentist and surgeon has a different solution, not to mention charging a fortune.

My head is swirling. I realize Orencia infusions are not good, so I am considering stopping them. The thought of my hands getting worse, though, makes me nauseous. Anxiety and depression make everything worse.

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Hi
Has anyone heard about carbon fibre instead of the titanium bar being used to straighten your scoliosis? This procedure is not done in Canada, but heard is was done in the US & ? Does anyone have real info about the carbon fibre
Need surgery, would like to consider the carbon fibre.

RL

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